A teensy little back story first. This week, six years ago, I got sick. I thought I had the flu, turns out it was Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. I’ve learned countless lessons, some good, and some I truly wish I’d never known. Since I’ve been down in the chronic illness trenches for a while now, I thought I’d just share six of the things I’ve learned because I’m wiped out and six seems fitting, since it’s been six years. Let me warn you, and reiterate, I’m wiped out so the below is kind of a just tell like it is, vs. edited and potentially non-offensive. Here are some things I didn’t know:
- I didn’t know there were illnesses that research was so grossly underfunded that doctors (so many doctors, actually most of the doctors) still hadn’t heard of them or been properly trained on how to care for their patients, despite millions of people having the illnesses.
- I didn’t know a chronically ill person could be repeatedly denied disability insurance even after numerous board-certified doctors explained that working would not be possible for said person. Side note, I also didn’t know that disability insurance would reference said doctors as dishonest or would refer to the patient as manipulating the doctor into believing the illness was severe, but they do.
- I didn’t know there was an illness that would drain the energy from your body to the point where you honestly don’t know if you’ll survive the night. Side note, I also didn’t know that with that illness you don’t go to the ER, no matter how off your heart rhythms are, because ER will do nothing more for you than make your condition worse, and send you on your way.
- I didn’t know that grieving your life of chronic illness, while still trying to have each day be as best as possible, is one of the hardest things you’ll ever do. No seriously, hardest ever.
- I didn’t know who would stay and who would fade away, and I can assure you if you’d ask, I would have gotten it mostly wrong. Seriously is it so hard to send a text once in a…I don’t know, ever?
- And finally, I didn’t know six years ago that today I’d be spending day 2,190 in bed writing a blog post (because I’m a blogger now, wouldn’t have seen that one coming either), filled with a few of the life altering realities of having a chronic illness that’s not well understood. However I also had no idea that at the end of the post I’d include my new favorite hobby of watercolor doodles (wait…what?! I doodle and watercolor now!? I mean who has the time for that!?…oh right, me).
Thank you for stopping in. I’ve hit a rough patch this week so most of the doodles I’m posting below I’ve posted previously. Hoping you’re able to stay safe and healthy wherever you are in the world. Take the best care.🌺